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Help at hand for people with debilitating illness

Posted on the 5th May 2016

People in Lancashire are being called on to recognise a debilitating, often painful and isolating condition known as CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) and take advantage of the help that the Lancashire Care NHS Foundation Trust offers to people diagnosed with the condition.

To raise awareness about the illness, the Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Specialist Service at the Trust is holding activities to coincide with the annual ME Awareness Week that this year falls on 9-15 May 2016. These include stands at the Minerva Health Centre in Preston on 9-15 May and a stand at Asda in Lancaster on Friday 13 May.

Irene Lewis, Specialist Occupational Therapist for the CFS/ME Service at the Trust, said, “CFS/ME is an illness that affects the body’s systems and the way that they work, particularly the nervous and immune systems. Feeling constantly tired or exhausted is one symptom and this is very different from normal tiredness. There’s sadly very little awareness about CFS/ME with numerous symptoms shared with other conditions. As a result, people with the condition are diagnosed rather late. However, there is a lot that can be done to help people manage the condition and the CFS/ME specialist service is at hand to empower people with the condition to live as normal lives as possible.”

CASE STUDY 1 – Steven Kidd

Steven Kidd, 30, is from Lancaster. He has been suffering from CFS/ME since 2010. “I’ve had this condition since 2010. I went from being a very active person of athletic standards to becoming a person very limited in what I could do. I used to run, cycle and ride cycling road bikes. I was going to ride cycling road bikes at a professional level and got myself very close to doing so. I went from being incredibly fit to this. My heartbeat would increase and I would feel muscular pain and be constantly exhausted.”

Feeling unwell, Steven left work due to his illness. “I went to my GP a number of times and had a cocktail of symptoms that can look like something totally else. However, they couldn’t fathom what it was. They just couldn’t get to the bottom of why I was so ill. As the illness progressed, different symptoms appeared and it was my heart that was of concern. I underwent tests in hospital and they just couldn’t understand what it was that I was suffering from,” he said.

“It’s a difficult condition to diagnose as the symptoms are shared with other illnesses and there isn’t much information about it. So when I was referred to the service, it was like a new world had opened up to me. I am now far more able than before. The service has been great and really taught me how to manage my energy levels. This started with small things such as walking and it just took off from there. The service provides a unique service in helping sufferers manage themselves; grappling with that was a fulltime job itself.

“I had been reduced from being an athletic person to someone struggling to do basic everyday tasks. The entire process was exhausting but then there was light at the end of the tunnel when I started to be seen by the CFS/ME Service. I had sessions with them every few weeks and was able to adapt myself to the condition.

“The most horrible thing is getting diagnosed with it. Some people think it’s psychological but it’s not—it’s something that many people do not know about. It did depress me a lot but I managed to get through. Some people say it’s due to laziness, but it’s not lazy people who get it. It’s people who overwork themselves.”

CASE STUDY 2 – Josh Durham

Josh, 49, had a viral infection after which he was left with severe vertigo that would cause him to lose balance. “I had post viral fatigue, then CFS/ME. That was 3 years ago and I was only properly diagnosed a year ago. They can only really diagnose it once they have exhausted all avenues. As I have friends who have CFS/ME, I had mentioned it to doctors and knew quite a lot about it. I had been taking a lot of time off from work and just needed a diagnosis to understand this.”

Prior to ME, Josh used to walk his dog morning and evening and spend 2-3 hours in the evening out walking. “Over the weekend, I would walk around 11 miles. I also used to do circuit training. My job wasn’t physically demanding, but involved being on my feet, doing presentations, working all day at events, running activities, and meeting members of the public face-to-face and doing casework with clients, which is pretty intensive. The clients we worked with would be those who are in crisis. I also used to dance once a week.”

Josh then got flu. “The flu was nasty and affected my ear. Things started falling apart and I couldn’t stand up. I couldn’t walk the dog due to constant exhaustion. I had to stop driving. My eyesight would also get blurry and still does due to the ME. It was frustrating that I wasn’t able to diagnose what it was. It felt like someone was beating me with a baseball bat as if someone had really punched you and caused muscle pain. I actually ended up splitting up with my partner, as I couldn’t be there for him emotionally and I wasn’t interested in a relationship.”

“Once I was diagnosed and I came into contact with the service, I learned about pacing. I needed advice on how to manage an erratic work pattern by pacing myself. This involves putting rest periods in and planning activities so you can remain symptom free and perform at an optimal level. The biggest thing for me was the brain fog that comes with ME and it was like I had no access to myself and I wasn’t concentrating.

“You can easily relapse and be unable to go into work. However, my employer has been very good and let me work from home. I was close to leaving on medical grounds. The work that the team has done hasn’t removed the Chronic Fatigue but allowed me to live with the condition and to be able to manage it.

“There is help out there that people don’t know about, and even if you’ve had it for a long time, then the service is great as they can show you a lot you won’t know about. The CFS/ME Specialist Service adds value to your life.”

For more information contact the CFS/ME team on 01772 777022 or visit www.lancashirecare.nhs.uk/CFS-ME.